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Validation of QUALAS-T, a health-related quality of life instrument for teenagers with spina bifida

INTRODUCTION: We aimed to develop and validate a self-reported QUAlity of Life Assessment in Spina bifida for Teenagers (QUALAS-T). MATERIAL AND METHODS: We drafted a 46-question pilot instrument using a patient-centered comprehensive item generation/refinement process. A group of 13–17 years olds w...

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Autores principales: Szymański, Konrad M., Misseri, Rosalia, Whittam, Benjamin, Casey, Jessica T., Yang, David Y., Raposo, Sonia-Maria, King, Shelly J., Kaefer, Martin, Rink, Richard C., Cain, Mark P.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Polish Urological Association 2017
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5656361/
https://www.ncbi.nlm.nih.gov/pubmed/29104796
http://dx.doi.org/10.5173/ceju.2017.1195
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author Szymański, Konrad M.
Misseri, Rosalia
Whittam, Benjamin
Casey, Jessica T.
Yang, David Y.
Raposo, Sonia-Maria
King, Shelly J.
Kaefer, Martin
Rink, Richard C.
Cain, Mark P.
author_facet Szymański, Konrad M.
Misseri, Rosalia
Whittam, Benjamin
Casey, Jessica T.
Yang, David Y.
Raposo, Sonia-Maria
King, Shelly J.
Kaefer, Martin
Rink, Richard C.
Cain, Mark P.
author_sort Szymański, Konrad M.
collection PubMed
description INTRODUCTION: We aimed to develop and validate a self-reported QUAlity of Life Assessment in Spina bifida for Teenagers (QUALAS-T). MATERIAL AND METHODS: We drafted a 46-question pilot instrument using a patient-centered comprehensive item generation/refinement process. A group of 13–17 years olds with spina bifida (SB) was recruited online via social media and in person at SB clinics (2013–2015). Healthy controls were recruited during routine pediatrician visits. Final questions were identified based on clinical relevance, factor analysis and domain psychometrics. Teenagers with SB completed the validated generic Kidscreen-27 instrument. RESULTS: Median age of 159 participants was 15.2 years (42.0% male, 77.4% Caucasian), similar to 58 controls (p ≥ 0.06). There were 102 online and 57 clinic participants (82.8% of eligible). Patients, parents and an expert panel established face and content validity of the 2-domain, 10-question QUALAS-T. Internal consistency and test-retest reliability were high for the Family and Independence and Bladder and Bowel domains (Cronbach's alpha: 0.76–0.78, ICC: 0.72–0.75). The Bladder and Bowel domain is the same for QUALAS-T , QUALAS-A for adults and QUALAS-C for children. Correlations between QUALAS-T domains were low (r = 0.34), indicating QUALAS-T can differentiate between distinct HRQOL components. Correlations between QUALAS-T and Kidscreen-27 were also low (r ≤0.41). QUALAS-T scores were lower in teenagers with SB than without (p <0.0001). CONCLUSIONS: QUALAS-T is a short, valid HRQOL tool for adolescents with SB, applicable in clinical and research settings. Since the Bladder & Bowel domains for all QUALAS versions are the same, Bladder and Bowel HRQOL can be measured on the same scale from age 8 through adulthood.
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spelling pubmed-56563612017-11-03 Validation of QUALAS-T, a health-related quality of life instrument for teenagers with spina bifida Szymański, Konrad M. Misseri, Rosalia Whittam, Benjamin Casey, Jessica T. Yang, David Y. Raposo, Sonia-Maria King, Shelly J. Kaefer, Martin Rink, Richard C. Cain, Mark P. Cent European J Urol Original Paper INTRODUCTION: We aimed to develop and validate a self-reported QUAlity of Life Assessment in Spina bifida for Teenagers (QUALAS-T). MATERIAL AND METHODS: We drafted a 46-question pilot instrument using a patient-centered comprehensive item generation/refinement process. A group of 13–17 years olds with spina bifida (SB) was recruited online via social media and in person at SB clinics (2013–2015). Healthy controls were recruited during routine pediatrician visits. Final questions were identified based on clinical relevance, factor analysis and domain psychometrics. Teenagers with SB completed the validated generic Kidscreen-27 instrument. RESULTS: Median age of 159 participants was 15.2 years (42.0% male, 77.4% Caucasian), similar to 58 controls (p ≥ 0.06). There were 102 online and 57 clinic participants (82.8% of eligible). Patients, parents and an expert panel established face and content validity of the 2-domain, 10-question QUALAS-T. Internal consistency and test-retest reliability were high for the Family and Independence and Bladder and Bowel domains (Cronbach's alpha: 0.76–0.78, ICC: 0.72–0.75). The Bladder and Bowel domain is the same for QUALAS-T , QUALAS-A for adults and QUALAS-C for children. Correlations between QUALAS-T domains were low (r = 0.34), indicating QUALAS-T can differentiate between distinct HRQOL components. Correlations between QUALAS-T and Kidscreen-27 were also low (r ≤0.41). QUALAS-T scores were lower in teenagers with SB than without (p <0.0001). CONCLUSIONS: QUALAS-T is a short, valid HRQOL tool for adolescents with SB, applicable in clinical and research settings. Since the Bladder & Bowel domains for all QUALAS versions are the same, Bladder and Bowel HRQOL can be measured on the same scale from age 8 through adulthood. Polish Urological Association 2017-06-23 2017 /pmc/articles/PMC5656361/ /pubmed/29104796 http://dx.doi.org/10.5173/ceju.2017.1195 Text en Copyright by Polish Urological Association http://creativecommons.org/licenses/by-nc-sa/4.0/ This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International (CC BY-NC-SA 4.0) License, allowing third parties to copy and redistribute the material in any medium or format and to remix, transform, and build upon the material, provided the original work is properly cited and states its license.
spellingShingle Original Paper
Szymański, Konrad M.
Misseri, Rosalia
Whittam, Benjamin
Casey, Jessica T.
Yang, David Y.
Raposo, Sonia-Maria
King, Shelly J.
Kaefer, Martin
Rink, Richard C.
Cain, Mark P.
Validation of QUALAS-T, a health-related quality of life instrument for teenagers with spina bifida
title Validation of QUALAS-T, a health-related quality of life instrument for teenagers with spina bifida
title_full Validation of QUALAS-T, a health-related quality of life instrument for teenagers with spina bifida
title_fullStr Validation of QUALAS-T, a health-related quality of life instrument for teenagers with spina bifida
title_full_unstemmed Validation of QUALAS-T, a health-related quality of life instrument for teenagers with spina bifida
title_short Validation of QUALAS-T, a health-related quality of life instrument for teenagers with spina bifida
title_sort validation of qualas-t, a health-related quality of life instrument for teenagers with spina bifida
topic Original Paper
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5656361/
https://www.ncbi.nlm.nih.gov/pubmed/29104796
http://dx.doi.org/10.5173/ceju.2017.1195
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